Just wanted to cry in OT today

[Southern Ivy]

Is she getting worn out in the half hour sessions? We drive 2+ hours each way, so we were motivated to increase the length of the sessions. If she fatigues at 30 minutes,  you might do the 30 minutes, break for lunch or the park, do another 30 minutes.

 

Not really. We do 30 minutes on Mondays, then Wednesdays are 30 minutes with a frantic drive to get to OT 15 minutes later (the ONLY way it could all work on the same days). Then we have OT for 45ish minutes. 

The drink seems to last her the whole time. She'll drink it on the way up to speech. 

 

On the caffeine, I mean it a step further. Like people will say Oh I'd never put my kid on ritalin, but they sit there guzzling tea and coffee. THAT is hypocritical. 

 

Ahh, gotchya. Didn't bother me either way. I mean, I see the contradiction of not wanting Adderall or Ritalin, but then giving her caffeine (a smallish amount though it is). 

[Southern Ivy]

Lecka made a really striking point, btw, that merely improving the dichotic listening is not going to eradicate all the deficits in input for how many years. You're working on retained reflexes now, right? And has anyone done the more basic, obvious level stuff like listening therapies? Metronome work? Some of that stuff is super cheap for a therapist to make happen. Like you just use a metronome app or they hand you an mp3 with the special therapy music. 

 

Yes, on the ATNR. No listening therapies or metronome work. 

 

I don't know, I'm pretty pragmatic. However I can see where this AK stuff is controversial, because it's taking a path to avoid rather than taking a therapy path to try to make more pathways in the brain. 

 

Really, it's no different than having an FM system, though, which they also prescribe. It's just another accommodation. The main controversy is that they test at an earlier age than the majority of people think they should. 

 

Edited November 10, 2017 by Southern Ivy

[Terabith]

Yeah, they're both pretty solid overlaps with those symptoms.

 

There's a school of thought (*cough*Barton*cough*) that says that CAPD is just dyslexia by another name. The CAPD community solidly disagrees. But, regardless of the stance, since so much of it is a brain issue, I'm not surprised at the overlap. 

In the CAPD Facebook group I'm in, a few of the kids have dyslexia and CAPD and some have been thought to have dyslexia, but testing was negative, so they tested for CAPD and that came back positive. There's a whole gamut, which, again, isn't surprising. 

 

 

(As for the letter sounds, she's not having trouble with letter sounds right now. We haven't even gotten that far. Right now, she can't even remember the name of the letter. She can easily identify them if told "find this letter" and given a picture. If I said, "Find the B", she'd be lost.  She can easily match the upper/lower case of all the letters. She can find the matches faster than I can in ABC Spot It. But, she can't tell you the name of them.) 

 

 

 

Wait.  WHY on earth are you trying to teach her the NAMES of the letters???  I mean, if she just picked up the names incidentally, that's one thing, but the number one thing to do when teaching kids the alphabet is to teach them the SOUNDS.  Like, if she sees a T, you say, "That's a /t/," giving the sound and not the name of the letter.  She has to learn the sounds in order to read.  Knowing the NAMES of the letters is totally irrelevant to pretty much anything outside of spelling bees. 

 

[Southern Ivy]

Wait.  WHY on earth are you trying to teach her the NAMES of the letters???  I mean, if she just picked up the names incidentally, that's one thing, but the number one thing to do when teaching kids the alphabet is to teach them the SOUNDS.  Like, if she sees a T, you say, "That's a /t/," giving the sound and not the name of the letter.  She has to learn the sounds in order to read.  Knowing the NAMES of the letters is totally irrelevant to pretty much anything outside of spelling bees. 

 

Umm, because that's how AAR pre-reading was doing it? lol I don't know. I always taught upper elementary. Preschool/kindergarten is all new to me and throw in learning challenges and I'm just treading water right now. 

[Heathermomster]

Wait. WHY on earth are you trying to teach her the NAMES of the letters??? I mean, if she just picked up the names incidentally, that's one thing, but the number one thing to do when teaching kids the alphabet is to teach them the SOUNDS. Like, if she sees a T, you say, "That's a /t/," giving the sound and not the name of the letter. She has to learn the sounds in order to read. Knowing the NAMES of the letters is totally irrelevant to pretty much anything outside of spelling bees.

 

The entire exercise was total crap. Edited November 10, 2017 by Heathermomster

[Lecka]

On LIPS, I am the only one posting here to ever see this.... but my son did similar techniques without doing the actual program in speech therapy.

 

I say this based on looking at reviews, samples, and at one point I could see a video of LIPS being used (it's taken down now with a huge site re-do on a webpage as far as I know).

 

So I don't think you have to have LIPS if you can get similar in speech therapy.

 

My son's was individually adapted for him.

 

But he qualified for speech therapy that did this only when he hit 3 years delayed in articulation, which is honestly not a good situation to be in. He was in other speech therapy for 2 years that didn't use the same methods and he didn't make too much gains.

 

For my son's speech therapy they would call it "phonological processes." He also had pretty extreme (for his age by the time he was older) fronting which meant he didn't make g/k sounds and it was like he didn't even hear the sounds to be able to make them. So he was technically learning to make the sounds, but they had to teach him to hear the sounds and tell them apart from d/t as part of it.

 

But they used multisensory techniques for him to learn the sounds similar to what I saw in samples/videos of LIPS.

 

Anyway -- maybe it is another avenue if you are able to get speech therapy that does this. But if they think she has more pressing goals or whatever, I think I would trust them, too.

 

My younger son is a different situation but he has had phonemic awareness goals in speech therapy since.... I think 1st grade. And I like what they are doing with him, too; but they don't do the same as what my older son did.

 

Anyway -- maybe you can ask the speech therapist if they can do it, if they can do it later, etc, or what they think goals are for now and why -- if it is foundational skills, or if it is just that they won't do it this soon in speech therapy. Bc that can be two different things.

 

Good luck, it sounds like you are getting a lot done!!!!!!

[kbutton]

DH is pretty firmly against meds until we come back from Colorado. However, I may talk to him about the benefits of the meds on APD and we'll see what he says. We waited as well. I don't personally think that meds make a difference in my son's APD stuff though. I am very much in favor of figuring out things a little at a time with an end goal in sight. There are so many things that go into figuring this stuff out, and "throw it against the wall and see what sticks" can make things harder in some cases.

 

 

I agree. I know it's not personal. I just know that wasn't her either (though the psych kept trying to insinuate that I wasn't being honest..."This behavior is definitely being reinforced from somewhere and I don't see a school enforcing it." 

Sorry, lady, I can guarantee you - THIS is not MY daughter.

I tried telling her that she had anxiety and she would act out, but it was almost as if she was determined to diagnose the ADHD. 

Not sure if you remember - and I didn't until I reread my first post - the psych initially met me and Riv and she said "I really think this is just a case of above average parents with an average child." So, initial meeting wasn't "crazy Riv", it was normal playing with a toy Riv. It wasn't until the testing happened and she was asked tons of questions and given explanations that she was "off". 

 

I think that having a psych that is determined to blame it on you in some form (your expectations are off, you're reinforcing bad behavior, etc.) is not a good one to tease this out. I do think that her reaction to your DD under testing conditions is still relevant data, as OhElizabeth has mentioned. I would not go as far as she did to say that it's buried under jargon. I think the psych is seeing something real, but instead of realizing it's the testing conditions, her personality, a bad day, or some other thing, she's pinning it all on you. If the psych is pinning it on you, then she is no longer objective, partly because she's assigned blame, and blame shouldn't be a thing in this situation. In addition, she doesn't even seem to realize that when kids have issues, parents do adjust what they do, and they SHOULD adjust what they do. That doesn't mean the parent is at fault. Parents sometimes adjust poorly vs. productively, but it sounds more like you are adjusting to what you see in a positive way and are now realizing that you are out of resources to continue responding positively, or that she needs a different kind of approach. That's all good stuff. In the context of her blaming you, what she said is offensive. As data, it's good information! 

[Lecka]

There are reasons to teach letter names to pre-schoolers, but when you have a struggling student it is probably just giving her one more thing to try to memorize.

 

Doing a regular program at an older age isn't the same as doing a program that is designed for kids who need extra help with certain areas.

[kbutton]

Here is my opinion on that: getting the filter tomorrow, if it works as you hope, won't make up for the 3 years that she didn't have it and other kids were making the associations of letter sounds in words. It won't make up for it.

 

 

:iagree: I wanted to isolate this comment because while Lecka is using this to bring in the phonological processing, I wanted to point out that this matter behaviorally and with other areas of life as well. My son still expects to NOT hear. I am not sure if he would test as absolutely having APD after the reflex work helped a bit (even though it helped with the background noise vs. the rate of speech problem), and he probably is a little better having passed that stage of brain development where the auditory processing makes a big surge (he's almost 10). But he still functions with a deficit. I am assuming from your comment that I quoted below, you are wanting to try to help with this by using therapy now. I think that my son would function better now if he had had access to therapy at your daughter's age. Why? Because he could bring his cognitive processes to bear on the problem. When he can think something through and understand it, it's a really powerful thing for him. For instance, he had fewer phonological deficits than your daughter, but he didn't hear vowels distinctly. He still has some trouble with them. The cool thing is that when he started to learn to read, he could SEE the difference between thin, then, and than and re-train his brain. Your DD might not be able to do this phonologically, but she might be able to with the behavioral aspects. For instance, if the filters help her hear better, she might opt to tune-in more often than tune-out. If she ends up with both APD and ADHD, that's a HUGE leg up for you. So, I say, go for it! If she grows out of her APD, fantastic, but maybe she'll be less "behind" her peers when she does. And if she doesn't, you have some trial and error under your belt to continue to help her. Just my two cents.

 

Right - I'm sure you know, just stating for anyone else reading... that portion of the brain does not fully develop until around 8. Thus that testing guideline. Kids can "grow out of" APD. If they still have it at 8, they will have it for life. 

 

It's a gamble for us to get this testing done, BUT if she does get diagnosed with it, it opens up more therapy options per our insurance. As it stands, they can not assist her in anything "academic", so no ABCs, sounds, etc. APD will open that for us. It would allow us to provide more treatments for her until she's 8, rather than waiting 3 years on a dyslexia diagnosis if that's indeed what she has. 

 

 

 

 

 However I can see where this AK stuff is controversial, because it's taking a path to avoid rather than taking a therapy path to try to make more pathways in the brain. 

 

I have wondered this same thing, but I am also guessing that the filters are different in some way from earplugs (which can do harm with long-term use from what I understand). I am also guessing that they *could* train the brain on what to listen for in a way that is similar to what LIPS or other programs do. It just gives nudges that discrimination ball down the field a bit in a way that is more similar to what a NT brain would already be doing. But if it were me using the filters, I would want to know more as well.

 

OP, I am so curious how this all plays out for you. I hope I am not nudging you forward on this with too much bias, but you are really looking at this much the way I have looked at my son's issues, only you are getting someplace earlier than I was able to.

[Lecka]

To explain more -- it has been a while since I have read Overcoming Dyslexia; but she talks about having a "stable neural representation" (iirc) of sounds. This means you hear the same sound the same way every time.

 

Now when kids don't have that -- how do they associate a sound with a letter? Even with letter names vs the sound they make ------ it is still basically associating a letter with the sound it makes.

 

So it is still a phonological issue in learning letter names -- that is my understanding.

 

I have a link to a video also, if I can find it.

 

 

http://www.readingrockets.org/shows/launching/brain

 

Go down to "bio-mapping the brain" and "baby's first reading skills."

[Southern Ivy]

Ok, totally off topic, but this kid kills me. 
I apparently ignored her when I was supposed to kiss her, but I didn't get the memo. Now, I'm trouble and stuck in a guessing game. 
She is sitting, very seriously, in a chair and has a paper. She is checking off my answers like I'm passing a quiz or something. 

What jumps really high? 
Good job. Now - What has a long neck?
What swims in the water and has sharp teeth and eats fish? 
What has horns in his mouth and a long trunk? (we corrected horns to trunks)

Now you have 5 seconds to guess. When the five seconds is off, you are banished to stay forever in the guessing challenge. 
WHAT swims in the sea that has 8 arms? 

Even harder now - 
What animal am I thinking of? 
A hamster.
No - guess more. You only have 10 minutes for the game. There's 10 minutes. 

(more guessing forever...)

And it's still going. We've moved on to guessing about random fake animals. 
"What is a cat that has 5 feet?" 
"I have no idea."
"A cha-me-yon cat" (chameleon)

lol She's not boring. 

Edited November 10, 2017 by Southern Ivy

[Lecka]

This is an aside to what kbutton said.....

 

For me personally, none of my kids have figured out hearing sounds in words by learning to read.

 

But what she says about her son learning to read and then telling apart similar-sounding words?

 

I have heard of this a lot! It seems to work out this way for a lot of kids!

 

Now not my sons lol, but I've heard of it a lot with other autism kids (a lot of kids with autism have issues with auditory processing). (My younger son has autism, not my son I talk about here.).

Edited November 10, 2017 by Lecka

[Southern Ivy]

I have wondered this same thing, but I am also guessing that the filters are different in some way from earplugs (which can do harm with long-term use from what I understand). I am also guessing that they *could* train the brain on what to listen for in a way that is similar to what LIPS or other programs do. It just gives nudges that discrimination ball down the field a bit in a way that is more similar to what a NT brain would already be doing. But if it were me using the filters, I would want to know more as well.

 

OP, I am so curious how this all plays out for you. I hope I am not nudging you forward on this with too much bias, but you are really looking at this much the way I have looked at my son's issues, only you are getting someplace earlier than I was able to.

 

 

This is the explanation given on FB that I found: 

 

So the way the filter was explained to us: If sound is combining into the the ears at different rates for each ear....the filter goes in one ear and it will slow the sound down before it reaches the point of processing making the sound in both ears more synchronized. The example was the doors on a train. When they are wide open the people get off quickly. But if the doors are narrowed it takes longer for the people to get off. That's what the filter does....it slows down the sound in one ear and enables better synchronization"

 

 

IN EAR

 

OUT of EAR

Edited November 10, 2017 by Southern Ivy

[Lecka]

See, my older son is 12 now. I couldn't find any info beyond the two library books (sound through water/brain can't hear). There was a chapter in "the mislabeled child."

 

I couldn't find any more info at the time for APD.

 

But on the reading/dyslexia side there was some more info on "that" part 6-7 years ago.

 

I am glad there is more available now :)

Edited November 10, 2017 by Lecka

[Southern Ivy]

:iagree: I wanted to isolate this comment because while Lecka is using this to bring in the phonological processing, I wanted to point out that this matter behaviorally and with other areas of life as well. My son still expects to NOT hear. I am not sure if he would test as absolutely having APD after the reflex work helped a bit (even though it helped with the background noise vs. the rate of speech problem), and he probably is a little better having passed that stage of brain development where the auditory processing makes a big surge (he's almost 10). But he still functions with a deficit. I am assuming from your comment that I quoted below, you are wanting to try to help with this by using therapy now.

 

I'm getting tired, so I *think* what you're asking is am I trying to decrease the deficit that she's working with? Heck yes, if possible. My thought process is that, if I can go ahead and start therapies or give her tools now, before she is years behind, then I want to do that. If she grows out of it, awesome! That was money well spent for those years. If she doesn't grow out of it, we have a standing relationship with amazing audiologists with an amazing technology that can assist her in noisy situations at church and other environments. It could assist her in her processing speed as she's not devoting all her time trying to decode or filter. 

If she doesn't grow out of it, I know that she will still have struggles. I know that things are always going to be harder for her. But, if I can catch issues now vs at 8 years old? I want to do that. 

 

I think that my son would function better now if he had had access to therapy at your daughter's age. Why? Because he could bring his cognitive processes to bear on the problem. When he can think something through and understand it, it's a really powerful thing for him. For instance, he had fewer phonological deficits than your daughter, but he didn't hear vowels distinctly. He still has some trouble with them. The cool thing is that when he started to learn to read, he could SEE the difference between thin, then, and than and re-train his brain. Your DD might not be able to do this phonologically, but she might be able to with the behavioral aspects. For instance, if the filters help her hear better, she might opt to tune-in more often than tune-out. If she ends up with both APD and ADHD, that's a HUGE leg up for you. So, I say, go for it! If she grows out of her APD, fantastic, but maybe she'll be less "behind" her peers when she does. And if she doesn't, you have some trial and error under your belt to continue to help her. Just my two cents.

 

That's my hope anyway. 

 

[Southern Ivy]

See, my older son is 12 now. I couldn't find any info beyond the two library books (sound through water/brain can't hear). There was a chapter in "the mislabeled child."

 

I couldn't find any more info at the time for APD.

 

But on the reading/dyslexia side there was some more info on "that" part 6-7 years ago.

 

I am glad there is more available now :)

Other than FB groups, a few internet searches, and the books, there's not a ton. A few more books, but nothing as good as Brain. 

[Southern Ivy]

Lecka - I'm not ignoring your posts. They're just taking more brain power than my daughter is allowing right now. :) We need to go to the grocery store, so I'll probably catch up a bit later. :) 

[Lecka]

Oh, just another thought.

 

There is something called ILS Integrated Listening Systems.

 

It is NOT evidence-based as a generic autism treatment. That is the only way I have evaluated it.

 

But a lot of people like it and say it has helped their kids who have autism and auditory processing issues.

 

I am just mentioning it since I never heard of it at the time with my older son.

 

But I know little about it, and I think it may be questionable.

[Lecka]

No, that's fine! I am a stay-at-home mom with kids in public school ;). I have got some time on some days :)

[kbutton]

This is the explanation given on FB that I found: 

 

So the way the filter was explained to us: If sound is combining into the the ears at different rates for each ear....the filter goes in one ear and it will slow the sound down before it reaches the point of processing making the sound in both ears more synchronized. The example was the doors on a train. When they are wide open the people get off quickly. But if the doors are narrowed it takes longer for the people to get off. That's what the filter does....it slows down the sound in one ear and enables better synchronization"

 

 

IN EAR

 

OUT of EAR

 

Ah, one of the things they test for with APD is ear advantage for various listening tasks. My son has an atypical ear advantage for almost every task.

[Southern Ivy]

Ah, one of the things they test for with APD is ear advantage for various listening tasks. My son has an atypical ear advantage for almost every task.

Can you explain to me what that is/means? 

[exercise_guru]

Southern ivy

I think this is your oldest or only child. For those of us who have been trying to work through challenges for our kiddos you may not realize how much stuff is out there. Some good some crazy some just to take your money. Whatever you find out for your daughter take your time and do your research. also I am always Leary of people who test my child also selling me things. I have read 5 books on CAPD over the years I have read all kinds of research. The conclusions are all over the place. I am very interested in this filter because it sounds like a dynamic filter that removes some noise and helps clear out the background. I know there have been studies where FM systems have significantly improved results in classrooms for both CAPD children and ADHD children. My son has CAPD and it truly does help to have that sound right where he can hear it.  I just wonder about how much a child would wear it and if it would get broken? We have a set of bone conduction headphones that we have lovingly guarded. I feel for parents whose children have hearing aids because those litter buggers are so expensive. In homeschooling I do not find my son has CAPD challenges if I am teaching him in a quiet environment and one on one. Ofcourse in school that is not an option. Your kiddo is quite young. I didn't realize you were traveling so far for testing. Please let us know what you find out. 

Edited November 11, 2017 by exercise_guru

[kbutton]

I believe ear advantage has to do with which ear interprets the information in the test more accurately. I think it's an indirect measure of the way the brain processes sound. There is a typical pattern for ear advantage based on various tasks (normed data).

 

I believe that atypical ear advantage is associated with a lot of language processing issues, not just APD.

 

I didn't get to look at this thoroughly, but it might be a good presentation: https://www.asha.org/Events/convention/handouts/2012/1055-Left-Ear-Advantage-in-Dichotic-Listening-A-Functional-MRI-Study/

 

[Lecka]

On having a quiet environment at a public school-- the district we moved from has study carrels that kids can use who need a quiet environment, and this can be time for kids to do seat work or can include tutoring.

 

But it is a can of worms (pros and cons) because it is taking kids out of the regular class for that part of the day. So definitely it works well for some, but there are a lot of reasons for it to not be a good choice for other kids.

 

And then there may be other options to go somewhere with a small number of kids for part of the day, too, where kids aren't alone or isolated, but it is a lot less noisy.

 

This is still also not a regular classroom, but I am seeing my son blossom in some of his language in a smaller class with fewer kids and less language. It isn't even "less noise" for him; it is just less language to process -- or that's what I think right now.

 

But then there are drawbacks to that too!

 

It is just pros and cons to everything.

 

Just to say -- there are options for kids to lessen background noise.

 

And I don't know if headphones help or not, just to have quiet, but that is an option too for kids who just need quiet to concentrate. Also there are ways to set things up so kids can have iPad breaks that function this way where it's the whole class having the chance to do it, so that certain kids don't stick out.

 

But definitely even with options a lot of times the options won't actually work or would have such drawbacks, that parents homeschool anyway.

[Lecka]

http://www.readingrockets.org/shows/launching/brain

 

I re-watched this, and I really so think my older son was like Jenna. It's just one part of auditory processing, but it is often treatable, so in a way that is good.

 

I never had my son tested for APD, but I assume he would pass the other areas.

 

Just this was enough for me to answer "yes" to screening questions for APD, though, iirc.

 

Something about my son, too. He only had trouble telling apart consonants; he never had trouble tellin apart vowels. He has never seemed to have as much in common with kids who struggle with vowels, and more in common with kids who struggle with consonants. I don't know what that is but I think it is something.

[geodob]

In regard to ear advantage?

This relates to the fact, that while the temporal lobes on each side of the brain.  Are involved with processing language.

The Left temporal plays a greater role in Comprehension.

 

Also the Right Ear connects directly to Left side of the Brain.

With the Left Ears connection to the Right side of the brain.

 

So that when the Right Ear is dominant, and the primary focus of auditory attention?

This direct access, supports greater comprehension.

Edited November 11, 2017 by geodob

[Southern Ivy]

Southern ivy

I think this is your oldest or only child. For those of us who have been trying to work through challenges for our kiddos you may not realize how much stuff is out there. Some good some crazy some just to take your money. Whatever you find out for your daughter take your time and do your research. also I am always Leary of people who test my child also selling me things. I have read 5 books on CAPD over the years I have read all kinds of research. The conclusions are all over the place. I am very interested in this filter because it sounds like a dynamic filter that removes some noise and helps clear out the background. I know there have been studies where FM systems have significantly improved results in classrooms for both CAPD children and ADHD children. My son has CAPD and it truly does help to have that sound right where he can hear it.  I just wonder about how much a child would wear it and if it would get broken? We have a set of bone conduction headphones that we have lovingly guarded. I feel for parents whose children have hearing aids because those litter buggers are so expensive. In homeschooling I do not find my son has CAPD challenges if I am teaching him in a quiet environment and one on one. Ofcourse in school that is not an option. Your kiddo is quite young. I didn't realize you were traveling so far for testing. Please let us know what you find out. 

 

I definitely will. 

I don't know if you missed it, but this is the explanation of how it works: 

If sound is combining into the the ears at different rates for each ear....the filter goes in one ear and it will slow the sound down before it reaches the point of processing making the sound in both ears more synchronized. The example was the doors on a train. When they are wide open the people get off quickly. But if the doors are narrowed it takes longer for the people to get off. That's what the filter does....it slows down the sound in one ear and enables better synchronization

 

Yeah, I'm usually pretty skeptical about places that test to sell you things too. But, one thing that struck me was that this is a non-profit foundation that doesn't really advertise their filter. It's mentioned under the management solutions part of their page, but there are no pictures or anything. I would never have found out about it had I not been on Facebook! It also makes me feel confident in them to know that not every body is a candidate for the filter. Some people don't see a benefit from it in testing, so an FM system is recommended instead. I feel like that also speaks to the integrity of their service. Plus, they have scholarships for those that make under a certain amount. 

(I know you weren't saying they are just selling a product. I had initially had that thought though, so I've done a lot of thinking and asking questions. So, this is more just explaining what my thought process was, I guess.) 

 

I've been so impressed with the stories of their patient care. A parent was discussing how the fit of their filter isn't quite right and it needs an adjustment, but she'd like it back before Thanksgiving. So, they're discussing solutions. This comment just totally impressed me: 

 

We have had such adjustments done in as little as 2-4 days using UPS overnight or second day air. In fact, we are in the midst of such an adjustment now. Shipping is pricey but our daughter is a freshman in college and has trouble coping with everything without the filter. On Wed., we called Able Kids, told them we were desperate (other filter has been lost) and asked if the doctor had time on Thursday to adjust... they said only in the morning because Dr Locke had a meeting out of the office in the afternoon. We sent the filter overnight to arrive Thursday at 10:30. She adjusted it and Rexann dropped it in the UPS box in the afternoon. We are to receive it tonight by 7. Whew! Praying it's right because our daughter needs it so much. She is home from college now but going back Sunday! Sometimes these adjustments have to be done 2-3 times for us...but the results are worth it. Able Kids is amazing.

 

 Another mom was commenting on a question of mine and said: they are special people. To this day, I can email the doc a question and she almost always responds same day and a couple of times has chosen to talk on the phone free of charge!!!

 

 

We are traveling far, but my husband is honestly so stressed by all of this with Riv. He is so facts oriented and he is so great at fixing things at his job. He can't fix this on his own and it is worrisome to him. So, for him, traveling for this was almost non-negotiable. I've even questioned the sanity of going for a "what if" and he's not budging. lol Even if we go and she does not have APD, we at least have an early answer and can move on to other avenues. 

 

 

**And totally random since I think it's neat - the main audiologist who tests right now was trained under Dr. Joan Burleigh. Dr. Burleigh is the co-founder of Able Kids and she also tested Temple Grandin's auditory processing. She's mentioned in Temple Grandin's book. 

 

ETA: 

How much would a child wear it? 

Most wear it all the time, except in water. 

 

Broken - 

If something is wrong, you can send it in to get it fixed for around $25. 

If it's lost, then you'll pay $195. 

I know that for younger kids, they can also do a clip/cord in the mold of the filter which can then attach to the child's shirt. 

Edited November 11, 2017 by Southern Ivy

[PeterPan]

Ivy, I think what's happening there is that once you've been around the block you get cynical. You haven't been burned yet. It doesn't mean this will burn you. It just means that after you go to enough OTs and VT docs and SLPs and and and, you'll probably have some jaded feelings too. 

 

I think you're on solid ground choosing to do SOMETHING, because you have the trait that isn't explained by other labels, the significant issue with background noise. I thought Kbutton's point was interesting that it would be worth watching to see how much her challenges in background noise improve when you get the reflexes integrated. It would be good to watch. Reflexes can integrate with 30-45 days of dedicated work, so that's something you'll have a sense on. And for me, with my own personal jaded bent, I'd be questioning anyone who says there's only one retained reflex. Could be, but I'm just jaded enough to say I'd test them yourself or get a 2nd opinion at some point. That's how that happens, where you go forward and realize things got missed.

 

We're parents who want to do ANYTHING WE CAN to help our kids. So of course you're going to go for this. Doesn't mean you won't have hindsite or oops or realize the other things you could have been doing. 

 

Btw, what is the approx cost we're talking here? Not the eval but the filter. We're talking in the sub-$500 range? If it is, to me that's an obvious thing to try. Even if you just used it to increase language input at this really pivotal stage of language acquisition, it could be astonishing. 

 

I'd like to think I could research hard enough to do everything perfectly, but reality is I don't. It's ok to make some mistakes in this process.

[Southern Ivy]

Ivy, I think what's happening there is that once you've been around the block you get cynical. You haven't been burned yet. It doesn't mean this will burn you. It just means that after you go to enough OTs and VT docs and SLPs and and and, you'll probably have some jaded feelings too. 

Oh, I completely understand and respect that. I recognized where people are coming from in that regard. I might sound like I'm trying to defend or whatever, but I don't feel defensive. I feel more like I'm just talking things out and explaining thought processes and adding in other thoughts that you all are providing. 

I hope that makes sense.  

 

I think you're on solid ground choosing to do SOMETHING, because you have the trait that isn't explained by other labels, the significant issue with background noise. I thought Kbutton's point was interesting that it would be worth watching to see how much her challenges in background noise improve when you get the reflexes integrated. It would be good to watch. Reflexes can integrate with 30-45 days of dedicated work, so that's something you'll have a sense on. And for me, with my own personal jaded bent, I'd be questioning anyone who says there's only one retained reflex. Could be, but I'm just jaded enough to say I'd test them yourself or get a 2nd opinion at some point. That's how that happens, where you go forward and realize things got missed.

 

When she was first evaluated, the OT evaluator did a half-a$$ed job testing her and said "She's fine. Nothing there." Pissed me off, because I could tell, just based on videos I had watched, that she didn't do them thoroughly. (I had initially told her that that was the main reason I wanted Dd tested and she looked at me like I was an idiot, then when I mentioned at the end that I wanted them done, she rolled her eyes and was complete witch about doing them. We left, but I knew that if it came back that SHE was the OT, we'd go elsewhere.) 

 

Her current OT was very open to rechecking her. He was very open in that he needed to refresh his memory on proper techniques for testing and then he would check her next time (from what I am gathering, there are just a couple of people who do the evaluations and the rest of the OTs do the therapy). But, the next time we came, that was the first thing he check and from what I observed, he was very thorough. He explained to me what he was looking for with each test and I watched and he watched. Granted, we might have both missed something, but I do know that the ATNR was glaringly obvious. The others? She did the tests very well. 

 

We're parents who want to do ANYTHING WE CAN to help our kids. So of course you're going to go for this. Doesn't mean you won't have hindsite or oops or realize the other things you could have been doing. 

 

Btw, what is the approx cost we're talking here? Not the eval but the filter. We're talking in the sub-$500 range? If it is, to me that's an obvious thing to try. Even if you just used it to increase language input at this really pivotal stage of language acquisition, it could be astonishing. 

 

The evaluation is $785. The filter, if applicable, is $195 (unless she wants a special color, then it'll be $10 more.) 

For us, insurance will pay 60% of the appointment (not the filter) as it's out of network. However, we have a very high HSA deductible, so that amount will just be added to the total deductible. We'll just use our HSA card to pay for it. 

 

 

I'd like to think I could research hard enough to do everything perfectly, but reality is I don't. It's ok to make some mistakes in this process. 

 

Wouldn't it be nice if everything was packaged nicely with a little bow? 

 

Edited November 11, 2017 by Southern Ivy

[Lecka]

I am excited to hear how it goes. You will get recommendations anyway whether they recommend the filter or not.

[EKS]

Umm, because that's how AAR pre-reading was doing it?

 

Really?  Wow.  That's disappointing.  

[kbutton]

I am excited to hear how it goes. You will get recommendations anyway whether they recommend the filter or not.

 

Me too! And FWIW, if you saw an audiologist that recommended an FM system or special hearing aids (both of which are possible outcomes), you are WAY AHEAD price-wise with the filters, including the eval cost. Hearing aids are astonishingly expensive, and they have a fairly short lifespan for that expense. Generally with something like digital aids, it can literally get into the used car price range. Insurance doesn't pay. I realize you have travel to factor in too.

 

For straightforward hearing aids, it's a different story, but for auditory processing, I think they typically want programmable stuff, so that's digital. FM systems are more expensive and are best suited for classrooms. For home use, they often recommend a digital hearing aid with and FM boot that can be used in a classroom or in situations where auditory assistance is offered (some churches, for instance, offer audio feeds for hearing aid users). 

 

Some people with APD don't find FM systems beneficial--my son didn't do so great when he borrowed one, but hearing aids were awesome. However, they have better FM systems now--my friend's daughter uses one at school, and it's amazing. It's top of the line.

[Southern Ivy]

Really?  Wow.  That's disappointing.  

We did not get very far into it. There are instances of sound, but it's not prevalent. 

So, for instance, the first lesson of AAR is on the letter A. It has them find letter A on the alphabet chart. It has them find A in the little animal story and they do an A picture. There is some rhyming work at the end. 

Maybe 4 pages totalish. 

 

***Just looked deeper into it; the sounds do not begin until lesson 27 when they address lowercase letters. 

 

 

Comparatively, Get Ready for the Code is the first pre-reading book for Explode the Code. The first lesson is F. 

The pages go like this: 

1) identification of letter

2) introduce sound

3) make the sound (tracing game in which they say the sound 3 times)

4-5) identify upper and lower f 

6) listen to riddles and identify pictures and identify that the 1st sound is f. 

7) Given sets of pictures; identify which picture starts with the sound f. 

8) practice writing 

9) Set of 3 pictures, identify beginning sound of f

10) writing and identifying which picture begins with F

11) one last page of sound identification

 

So, yeah, at least in the beginning lessons that we did, AAR was missing a lot of sound identification. We're going to start Get Ready for the Code, so we'll see how that goes.  

Edited November 11, 2017 by Southern Ivy

[emmaluv+2more]

We did not get very far into it. There are instances of sound, but it's not prevalent.

So, for instance, the first lesson of AAR is on the letter A. It has them find letter A on the alphabet chart. It has them find A in the little animal story and they do an A picture. There is some rhyming work at the end.

Maybe 4 pages totalish.

 

***Just looked deeper into it; the sounds do not begin until lesson 27 when they address lowercase letters.

 

 

Comparatively, Get Ready for the Code is the first pre-reading book for Explode the Code. The first lesson is F.

The pages go like this:

1) identification of letter

2) introduce sound

3) make the sound (tracing game in which they say the sound 3 times)

4-5) identify upper and lower f

6) listen to riddles and identify pictures and identify that the 1st sound is f.

7) Given sets of pictures; identify which picture starts with the sound f.

8) practice writing

9) Set of 3 pictures, identify beginning sound of f

10) writing and identifying which picture begins with F

11) one last page of sound identification

 

So, yeah, at least in the beginning lessons that we did, AAR was missing a lot of sound identification. We're going to start Get Ready for the Code, so we'll see how that goes.

I've been following along and just wanted to say that none of The Code books did a darn thing for my dd who sounds like the exact replica of your dd (I too believe mine has either APD or dyslexia with ADHD). For us, it simply took a lot of time, practice, and patience to master letter sounds and names.

 

She just might have an easier time recalling letter sounds than names. It has to do with word retrieval.

[Lecka]

There used to be some master list or website (probably a website?) of multisensory ideas or games for learning letters, but I don't know it now. It was stuff like salt trays, writing letters on the sidewalk and jumping on them (or bounce a ball on them), tracing with a finger onto a rough fabric, using your whole arm to make a huge pretend letter....

 

I don't know what it was now but it had a lot of ideas, that kind of thing went a long way for my son. Partly to keep it fun and keep him engaged, too.

 

Another game my younger son played was taping things to a wall and then he threw crumpled up pieces of paper at them. Much more fun for him than flash cards.

Edited November 12, 2017 by Lecka

[Southern Ivy]

I've been following along and just wanted to say that none of The Code books did a darn thing for my dd who sounds like the exact replica of your dd (I too believe mine has either APD or dyslexia with ADHD). For us, it simply took a lot of time, practice, and patience to master letter sounds and names.

 

She just might have an easier time recalling letter sounds than names. It has to do with word retrieval.

Well, bless it. :/ 

 

Oh well. We'll try it. They were only $20, so it didn't break the bank. She seemed interested in them, but I admit I'm not holding my breath. 

[TracyP]

Well, bless it. :/

 

Oh well. We'll try it. They were only $20, so it didn't break the bank. She seemed interested in them, but I admit I'm not holding my breath.

Well, Get Ready for the Code was what finally taught my APD/MERLD son his letter sounds. The other ETC books didn't work for him, unfortunately, but I was pretty happy with those books. It could be that it was just luck after trying several other methods. Still, I wanted to offer some encouragement.

[Southern Ivy]

Well, Get Ready for the Code was what finally taught my APD/MERLD son his letter sounds. The other ETC books didn't work for him, unfortunately, but I was pretty happy with those books. It could be that it was just luck after trying several other methods. Still, I wanted to offer some encouragement.

That's good to know! Thanks. :D 

[Southern Ivy]

So, I've been doing a lot more reading (and I ordered The Dyslexic Advantage), but going through some different symptoms, I can really see where you all were coming from in regards to the dyslexia. 
I'm going to call Monday to get an appointment for ADHD meds and going to schedule the CTOPP for December. We're still going to have her tested for CAPD to rule it in or out, but at least with the meds and the CTOPP, we'll have more info to present as well. 

I'll keep y'all all posted on how it all goes. 

[Lecka]

Good luck!!!!!!  Let us know how it goes! 

[PeterPan]

DA is good whether you end up getting a dyslexia diagnosis or not. I found the profiles really helpful with dd, who is not diagnosed as dyslexic and less helpful with ds, who has a much more complex presentation. I figure if it seems to fit and answer the questions, roll with it. Their general thesis is looking at the spacing of mini-columns and the effect on cognitive profile. It's really interesting stuff. And if you go wow, doesn't fit, then that's really informative too. 

Edited November 13, 2017 by OhElizabeth

[Southern Ivy]

DA is good whether you end up getting a dyslexia diagnosis or not. I found the profiles really helpful with dd, who is not diagnosed as dyslexic and less helpful with ds, who has a much more complex presentation. I figure if it seems to fit and answer the questions, roll with it. Their general thesis is looking at the spacing of mini-columns and the effect on cognitive profile. It's really interesting stuff. And if you go wow, doesn't fit, then that's really informative too. 

I'm impressed. I ordered it yesterday on the way to church and Amazon just delivered it. 

[PeterPan]

Amazon is spoiling you! :D

[Southern Ivy]

Amazon is spoiling you! :D

This has NEVER happened before. lol I was shocked. 

[Lecka]

https://www.amazon.com/phonological-Books/s?ie=UTF8&page=1&rh=n%3A283155%2Ck%3Aphonological

 

I haven't used or seen either of these, but there are the top two choices for typing in "phonological" on Amazon. Maybe worth looking at.

[Southern Ivy]

https://www.amazon.com/phonological-Books/s?ie=UTF8&page=1&rh=n%3A283155%2Ck%3Aphonological

 

I haven't used or seen either of these, but there are the top two choices for typing in "phonological" on Amazon. Maybe worth looking at.

 

Thank you! I'll check those out! 

 

We have an appt for ADHD meds on Nov 28 (Hopefully, the doc is open to the meds now. We originally talked and agreed to do special diets and such and revisit in 6 months. It's a bit early, but I'm hopeful when I give her things I'm seeing and the tests that are coming up, that she'll be open to meds. She's VERY anti-meds at dd's age.) 

 

Anyway, assuming we get the meds, we have an appt for the CTOPP on Dec 9. So, hopefully, we'll have more answers soon. 

[ktgrok]

https://www.amazon.com/phonological-Books/s?ie=UTF8&page=1&rh=n%3A283155%2Ck%3Aphonological

 

I haven't used or seen either of these, but there are the top two choices for typing in "phonological" on Amazon. Maybe worth looking at.

 

Road to the Code has a bunch of research backing it. Just got my copy today. 

[PeterPan]

Feel free to keep informing us about all this great stuff you learn! :D  

 

Have you done any RAN/RAS work yet? RAN/RAS is on the CTOPP in several forms, so it would be *nice* to have that test done for a baseline before you work on RAN/RAS. Or did your other testing hit RAN/RAS? If you've got baseline RAN/RAS scores, personally I'd be burning rubber on that. You're gonna LOVE what it does for her brain, and it's simple to do and stupid cheap.

[ktgrok]

I'm using some of the Abecedarian stuff (tweaked) to hit RAN/RAS..sneaking it in. But some of the stuff I've found seems to indicate that RAN goes up as you work on other stuff, on it's own, and that working on it directly doesn't give much more boost. So doing it, but not focusing on it. 

[PeterPan]

Maybe we got a big boost because of my ds' language issues? The exercises were overtly HARD for ds when we started and improved. So for him the change was noticeable.